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Miriam Barry

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Children's Brain Tumor Foundation Inc
February 26, 2009

CBTF didn't exist when my 12 year old daughter Reina was diagnosed in 1988. We lived through her surgery, radiation and chemotherapy and heard about a group of parents that wanted to support research for pediatric brain tumors. This sounded right to me. At my child's diagnosis, the doctor said that all he had on Reins's diagnosis -- anaplastic ependymoma- was a stack of 100 journal articles. He would treat her as best he could, and since ependymoma was something like medulloblastoma, he would treat her like she had medullo. Twenty years later I can say that we got through Reina's treatment, but this does not tell anything about what we went through. I found solace in the group of parents who had dedicated themselves to funding research, and within a year, joined them. We supported each other, cheered the victories and mourned the losses. And there were many losses. But within three years, we had raised enough money to fund a research project in Interluekin II. I couldn't believe that we were actually going to pay a scientist to study a promising new treatment! In the years since, we have funded about $7 million in research for pediatric brain tumors and support for families of these kids. In fact, if my daughter were diagnosed today, she would have surgery and radiation, but no chemo -- the result of research that showed that chemo did not add to survival rates. I spent many years talking to parents of kids with brain tumors, helping them negotiate the medical system and get the best treatment for their children. When CBTF hired a social worker (we now have 2) I continued on a limited basis, and became part of CBTF's Parent 2 Parent network. CBTF has positively impacted on many families, and I am always gratified to know that CBTF was able to help a family through the most difficult of life experiences. And I am please to write that Reina survived her tumor and treatment, went on to finish school and college, got married and has a family. I often say that she recovered very well, but I am still working on my own recovery! Part of my recovery is working to make sure that children diagnosed with a brain tumor today have better options than my child had, and CBTF is my avenue for doing so.

The Great!

I've personally experienced the results of this organization in...

There have been changes in the way children with brain tumors are treated because of CBTF supported research. Survival rates have improved

Ways to make it better...

If I had to make changes to this organization, I would...

encourage everyone to get involved and continue the progress that CBTF has made

More feedback

What I've enjoyed the most about my experience with this nonprofit is...

the feeling that I am making a meaningful contribution that will impact a child's life, and working with like-minded people who feel the same way

The kinds of staff and volunteers that I met were...

the most dedicated and capable people. I am proud to know them.

If this organization had 10 million bucks, it could...

hire the best and brightest to solve the mystery of brain tumors and find a cure!

Ways to make it better...

we had more people to help us do this important work.

In my opinion, the biggest challenges facing this organization are...

the fact that families of newly diagnosed children are busy taking care of their kids and often are not able to take on the challenges we face in finding a cure. These families would be our best advocates

One thing I'd also say is that...

I never thought I would live to see CBTF make a difference in the way brain tumors are treated in children. But changes have taken place, survival is edging up, and our work has begun to have an impact. I am priveleged to witness this in my lifetime.

When was your last experience with this nonprofit?

2009

MY ROLE:
Board Member & I helped raise money and awareness, became a Parent 2 Parent volunteer.